We are four lifesaving bone marrow/stem cell donors, ask us anything!

I'm signed up as a donor on BeTheMatch (the national bone marrow donor registry for the US). The last time I mentioned it on Reddit, I got a bunch of replies saying, "Isn't donation incredibly painful and risky?!" I know donating via a blood draw isn't painful or significantly risky, but what about the pelvic bone tap? Can any of you speak to this? Elsewhere on the Internet, personal accounts of the procedure are pretty variable.

EDIT: Added link to BeTheMatch. Signing up is easy: volunteers receive a cheek swab kit in the mail and simply mail it back.

I’m also signed up with Be The Match and if I get called to donate I will be happy to do it, even if it’s hard. But I wish they’d stop sending me emails saying “recommit now!” I’m already committed and every time they send me an email I get nervous that it’s time!

I signed up like 7-8 years ago. Not a single peep. I’m concerned if they did need me, I wouldn’t actually see the email since contact information has changed. Sad to think nobody wants my body.

Hi Team-CCP, I would recommend contacting whichever company you're registered with to make sure you're details are up to date so that they can get in contact with you if they need you. For me it took approx 4 years to be a match for someone, but I know some people who have been on a register for decades and not been contacted. I suppose the most important part is ensuring that if you are a match - they can tell you! :) - Nathan

Ben - I donated via bone marrow and I had no pain at all. If anything I'd say it's easier than the PBSC because I was under anaesthetic for the whole time! I woke up and felt a little bit stiff and sore but when you think of what's been achieved by doing it, it's a no brainer. I'd really encourage anyone who's able to, to sign up and get on the register. www.anthonynolan.org/reddit

Signed up, thank you!

Amazing thank you so much, it really does make such a difference! -Ben

Hi! Leukemia survivor here. I was lucky enough to never need a bone marrow donation, but I appreciate that the option was there thanks to people like you.

How do they get the bone marrow out? Is it basically a bone marrow biopsy? I had lots of those and they really aren't that bad, but people talk up bone marrow donation like it's something scary.

Hi Diffyqgirl, It's really not as scary as you'd think. Everyone was so supportive and made the experience so easy. As far as I'm aware it's probably easier to do the bone marrow donation as I was under general anaesthetic the whole time so didn't feel a thing. When I woke up I was slightly sore but other than that was nothing to worry about! - Ben

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We only take a small part of marrow and yes it grows back! It’s very liquid so you can think of it as just taking a few spoonfuls of soup from a bowl. It will grow back all within a few days. It does not shorten the donors lifespan.

Ben- It definitely doesn't shorten your lifespan (believe me I checked before I signed up too!). It's been such an amazing experience from start to finish.

I just went through the procedure and from what I understand pelvic extraction is used mostly in cases where the donor is pediatric. For me the donation process only took a few hours. It was like donating plasma. The pain level was about a 0.5 out of 10. For such a life saving procedure I would've expected it to be more intense.
Also what a lot of people don't realize is that you get a a lot of free labs and tests done on you that you can send back to your Primary Care Physician. If there is something not perfect about you they will find it.

Jack: I donated via PBSC, and it was virtually painless, and there were no lasting effects at all, i was able to go home the same day and was right back to normal the day after!

I've considered doing so, but I've been told it's very painful. Is this true?

I've signed up a few years ago. I don't really care if it's painful. It's worth saving someone's live.

You're right. I signed up now anyways.

alex: that`s fantastic!

alex: I didnt find it painful. I think that if you were in that situation and were willing to accept it, you should be willing to give it.

Jack: i donated via my bloodstream and it was a little uncomfortable, but not really painful at all! the painful part was having the needles being put into my hand and arm but after that it was just uncomfortable, not painful!

What motivated you to become a donor and what was the process like? Implicitly, where are you from and where was the procedure done?

Hi ghitzabomba, I donated last year and I became a donor several years ago when I was at an event they were holding. After being told I was a possible match for someone I had to get some bloods taken to check I was compatible with them - and then shortly after (several weeks), I travelled down to London (I'm from Newcastle). Once for a medical exam to check I am okay to donate and then again a week later to donate. The donation was simple and just involved my stem cells being taken out of my blood via PBSC (using a machine similar to a dialysis machine). - Nathan

What was the most unexpected experience for you during donation?

Did you all donate via apheresis? (Do they even do the surgical donation anymore?)

Hi Boringdollar, The donation process went rather smoothly (took approx 5 hours, 4 of which were hooked up to a machine similar to that of a dialysis machine), the only sort of unexpected experience was it took the nurse 3 attempts to put the cannula in my arm but then once that was in everything went smoothly and painlessly. If you haven't registered I would highly recommend it at: http://anthonynolan.org/reddit You could be a match to someone in need! :) - Nathan

I have autoimmune health problems and am not eligible to donate bone marrow or plasma. My uncle lived a decent life only because of organ transplants, and I want to help donation efforts if I can. What are some ways other than donating or giving money that I could help this cause?

Hello blandastronaut There are always other ways in which you can help Anthony Nolan such as fundraisers and raising money - or just simply raising awareness. We always need more donors to join the register so please encourage your family and friends to join the register in case they're a match for somebody and don't even know it yet! http://anthonynolan.org/reddit - Nathan

Do you know who you donated to? Thank you!

alex: I don't know who I have donated to or know much about them but they send me anonymous cards thanking me

Do you know who the people you donated to are?

In case you dont, I want to say thank you on their behalf. My mother in law had double hit lymphoma, got all the chemo and radiation they could give her but nothing worked. She got a bone marrow transplant but it didnt seem to work and she developed graft versus host disease, so they gave her the official terminal diagnosis.

As she was moving home to America to be with family before dying the transplant seemed to kick in and stop attacking her. So here two years later she has been to our wedding, her other son gets married this year and we get to have her around thanks to a wonderful stranger being willing to donate. So on behalf of everyone benefiting from wonderful strangers like you thank you so so much.

Hi Sineadphy I don't yet know any information about my recipient however I am able to receive more information around 6 months after my donation relating to their progress. After 2 years, I am able to receive contact form the recipient however they have to initiate the contact. I am glad to hear that the transplant helped your mother-in-law, I hope she lives a long and happy life. - Nathan

I'm on the bone marrow registry in the UK, so in theory could get called up at anytime, so I have a few questions:

• Does donating bone marrow hurt? What is the sensation like? If there is pain how long does it last for?

• How long in total were you in hospital for?

• How many days in total did you have to take off work?

• Are you sore for some time after the procedure, if so for how long?

• Do you feel exactly the same as you did before you donated bone marrow?

• Do you get to find out what your bone marrow will be used for, or even who it is being donated to (I presume that latter would only be if the person receiving the donation was happy for the donor to know who they were).

• And lastly would you say it was worth going through with and if so why?

Thank you in advance if you get around to answering my questions - the world needs more people like you!

Ben - Hi gibgod, thanks for all of your questions! * It wasn't painful at all, I was under anaesthetic for the whole procedure so didn't feel a thing! * I was submitted to hospital the day before the harvest and after a nice sleep in my private room woke up to have the procedure. I then had to stay overnight just so they could do some checks on me and make sure everything was fine and then I was let out the following morning. * I took 5 days off of work which was the amount recommended to me by the guys here at Anthony Nolan. * I was slightly sore but nothing you can't manage. It really is a myth that it's so painful! * Physically I feel completely the same, other than that I feel amazing that I've potentially saved a life. * I got to know a few details but nothing that would give it away. After 6 months you're able to communicate anomalously but after two years I believe you get the choice whether you'd like to meet up! * It was so worth doing, I've had a letter and a card from my recipient saying that everything's going well and it was honestly the best feeling knowing that it went well and that it's making a difference to the donor their family and friends.

I'd really recommend signing up if you're able to it's such a rewarding experience and was 100% the best thing I've ever done! www.anthonynolan.org/reddit

Why are there so many bone marrow registries (bethematch.org, www.dkms.org, www.giftoflife.org, www.deletebloodcancer.org, etc) ? Does it matter which you use?

Hi rausrh You only need to sign up to one of the many registers as they all share their register (globally) so you can be found as a match for anyone just by signing up to one! Sign up today: http://anthonynolan.org/reddit - Nathan

Is there a limit to how many times a person can donate? Are we more likely to match with family?

Basically, if I donate today and my child requires a donation in 3 months can I donate to them then as well?

Hi troyjh Anthony Nolan only allows donors to donate to unrelated recipients twice, however this count doesn't include family members. 25% of patients find a match from one of their siblings, and the other 75% rely on AN to find them an unrelated donor (like me). You are able to donate to a relative after donating to an unrelated recipient, if you are fit and able to do so. - Nathan

I registered through the DoD site salutetolife.org last year. Are the databases shared or would you need to register multiple times?

Hi FreshDoughy Worldwide the registers for bone marrow donors are shared so you only need to sign up once and you can be found to be a match to someone anywhere in the world! - Nathan

I just got the call that I'm a bone marrow match within the last month and I've just completed the last blood draw to ensure everything is compatible. I'm not so much worried about the physical pain as I am the potential emotional drain I might feel? I'm a pretty sensitive person, I cried (happy tears!) when I got the call and I'm just wondering if any of you found the process emotionally taxing and how you dealt with it?

Hi FuckCargoShorts First of all, I agree with your opinion of cargo shorts! Secondly, personally I felt a little anxious when I was in the stage you're in as I wanted to know I was a match and that I'm going to get the chance to potentially save a life! I was ecstatic when I received my confirmation that I'm a match and can donate. When I went to donate (and to my medical) Anthony Nolan paid for my partner (or could've been a family member or friend) to go with me and this helped a lot and made me feel much more comfortable. Personally, I didn't receive any physical or emotional side effects from the donation - I was actually happier than usual for at least a week afterwards at the though of what I had just done and the potential life I had just saved. Just remember that there are many people around you, or otherwise, who can help you and will be there to support you throughout and make the whole process as easy and comfortable as possible! - Nathan

Firstly, you all are awesome.

How long were you on the list before you were called? I joined the Be The Match registry in 2016. I know there is a possibility I'll never be needed, but just curious what the average is.

Jack: I was called as a potential match 3 months after signing up but some people wait 2 or 3 years or might never be contacted!

So, from what I understand, your bone marrow goes on to form the recipient's blood. Does that enable your soul to control their body? Can you use them as a horcrux if your soul is powerful enough to push theirs out?

Hi GreenStrong, Careful, you'll expose us... Total world domination isn't an easy target to achieve. - Tom Riddle

Do you know who your marrow went to? Also, thank you for doing this, truly a gift of life.

Hi Derpazor1 I know very limited information about my recipient at this stage (I only donated in August 2018) - however after approximately 6 months you can (if you choose) receive some information on their progress / condition. After 2 years from your donation, you may be contacted by the recipient however it is their choice whether or not to initiate contact. - Nathan

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Hi DongLips, I've received a letter and a card from my recipient saying that they're well and this time last year he was in hospital so it really does make a difference!

I signed up to be a bone marrow donor a long time ago but haven't yet been able to donate. Is it normal to be waiting 3-4 years for someone to want to harvest my precious, precious marrow? Well done to all 4 of you, you're good eggs.

Hi Darth_gibbon Unfortunately there isn't always a match for everyone, or if there is it may take 1/5/10/20 years to be called - however it is always better to have too many than too few donors! Personally, I was on the register for 4 years before getting called up however I know some of the other donors with me today were only on the register for a few months before getting contacted. - Nathan

Hi guys thank you for donating. I am currently in hospital in London having just engrafted with my donor cells for my AML. I was overwhelmed when I received my cells and cried real tears of gratitude at an unknown stranger who was saving my life and giving me a future I wouldn't have otherwise.

My question: have you found out who you donated to and have any of you been in touch? I'd love to contact my donor and give personal thanks but I'm not sure if this is ever done?

Hi ChipChino Congratulations on having your transplant and I wish you all the best in your recovery. I only donated in August 2018 so it hasn't been long enough yet since my donation to receive any information about my recipient however it is possible for me and my recipient to anonymously contact each other via the register (Anthony Nolan). If you would like to speak to anyone about your transplant you can always contact Anthony Nolan's Patient Care team you can do so via this website http://anthonynolan.org/patients - Nathan

How does it feel knowing that people are alive because of you?

Hi sackman32 I was very happy for at least a week afterwards, constantly, at the though of what I had just done and the life I may have just saved! And I would definitely recommend it, and I would do it again! http://anthonynolan.org/reddit - Nathan

What was your reaction to finding out you had a match? Did you have any hesitation to move forward?

Jack: I was at home when i found out and was genuinely surprised, given that sometimes the odds of being a match for a stranger are so low! I was looking forward to the opportunity to do something very worthwhile! I didn't have any hesitation at all and was looking forward to getting things moving along! I think it reaffirmed the reasons why i decided to donate in the first place, if anything!

First off, a sincere thank you. Thanks to folks like you, I'm still here and just celebrated 13 years of remission.

My question... Assuming you were matched unrelated donors, have you been in contact with any of those you donated to?

Jack: I did donate to someone unrelated, and haven't been in contact with my recipient so far! There is a 2 year period where you can talk anonymously and after that you can meet, but it depends on the country! If you've had a transplant, have you ever been in contact with your donor?

When AN first got in touch with you to say you were a match what were your first thoughts?

I’m on the register and feel like I would be super excited, but feel like that’s not normal haha

Jack: I was surprised honestly, as I didn't expect to be contacted so soon (3 months) after signing up, but i was certainly excited by the opportunity to help someone out! I think its normal to be excited by such a great opportunity!

I signed up on BeTheMatch the day I turned 18, and now I am 21. I have never been contacted to donate. So, I guess my question is... How rare is it to be contacted to help? I don't care about the possibility of it hurting, or having to stay in a hospital or anything, I just want to help someone.

Hi krazykat1024 I absolutely agree, I just wanted to help someone too! Personally, it took 4 years on the register before I was contacted to donate, some of the other donors with me here today it was only a few months. It can be years or decades before you're contacted, or you may never be contacted - however we can hope that someday soon you get contacted and are called up to save a life! - Nathan

Did you experience back or hip pain after the donation?

Hi Dr_batmann So there are actually two different methods of donating. The method I believe you are referring to is bone marrow donation from the pelvic bone where you are sedated and may experience pain for up to a week afterwards. However, Ben (another donor who is here with me today) used this method of donating and didn't experience much pain afterwards at all. I experienced the second donation method - PBSC, where I had to lay in a hospital bed for around 5 hours while my blood was cycled through a machine next to me (similar to a dialysis machine) and it wasn't paint, nor did I recieve any side effects afterwards. Also, the PBSC method which I am talking about is actually used in 90% of all donations. - Nathan

What is the number one thing you want normal people to know/understand about what you do?

Ben - I literally just think it's incredible that something inside of me can potentially help cure someone with a terminal illness. Everyone can do it, and considering that it has literally has no impact on your health after the donation it was obvious for me that I should go for it so I'd really encourage you to as well! www.anthonynolan.org/reddit

I am considering becoming a bone marrow donor. How painful was the procedure/recovery and did it prevent you from working? Being out of work is an obstacle I'm not sure how to overcome.

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Edit: I'm also a wuss when it comes to taking blood- but I would be willing to endure it for a good cause like this.

Hi GeauxAllDay, For me the procedure itself went without a hitch, the most paintful part was the nurse putting the cannula in my arm - but once it was in (along with the regular needle in my other arm) I just had to lie comfortably in the hospital bed for a few hours while my blood went through a machine next to me (similar to a dialysis machine). The recovery for me was fine, I actually had no side effects other than feeling very happy at the thought of what I had just done! I was off work for 2 days (a Thursday and Friday) so I didn't have to miss much, and if I did need some time to recover afterwards I would've had the weekend so. - Nathan

Do you know or keep in touch with the people you donated to? I feel like that would make for some great conversation haha!

Ben - I've had both a letter and a card through the post from the recipient and their family which was really lovely to hear how their doing!